day 7 adventures

I got to the hospital early yesterday—my eyes had popped open at 5:14am, my brain and heart already racing with all the unknowns. Did Oscar have Central Adrenal Insufficiency? What if he did need surgery to resolve the pneumothorax*?

Paul and Oscar were already awake when I arrived—the schedule of meds and x-rays prohibits more than an hour of sleep at a time. Oscar’s nurse was just about to draw blood to check for CAI. I kicked Paul back to the hotel for a few hours of rest, and got Oscar up and walking. His color was better, but he was still lethargic and weak, taking ten minutes to muster the will to move his legs to the side of the bed so I could start tying his shoes. Once up he always moves quickly, not gingerly like most spine patients—but he still complained of lightheadedness. I extended the walk to include the therapy wing and we ran into his PT, who stayed ahead of Oscar removing obstacles from his path. His patience waned and he took off for the PICU, me trailing with the chest tube drainage, and got back in bed.

Sometime late morning Oscar’s cortisol came back, normal. No CAI. I talked with his home endocrinologist to confirm and went back to scratching my head. Why was he so lightheaded? Why the sweating and slurring? He’d had enough fluids but they supplemented anyway to see if it would help.

Around noon the thoracic surgeon that Dr. C. had called arrived to look at Oscar’s tube and help devise a plan. He and Dr. C decided to remove the original chest tube and replace it with a small one, to see if that would resolve the issue. Either the chest tube was faulty or air was leaking in around the insertion site. This would help us figure it out. Two hours later Oscar’s bedside turned into an operating room. Dr. C and Dr. Thé gowned up, laid down a blue cloth and created a sterile field along the length of Oscar’s upper body. A purple cart with drawers of medical instruments appeared, and our nurse, Pam, turned on the bright overhead lights and handed out face masks and blue caps to everyone, including us.

I stood on the other side of his bed holding his hand and translated the scene. “It’s just like at the dentist, O, when Dr. Lim puts on his mask and his assistant opens all the sterile dental instruments. They just need to make sure anything touching your body is clean so there’s no chance of infection.”

He relaxed for a moment, almost smiling. “Yeah, right, like the dentist.”

But the procedure was stressful. I had turned down valium and conscious sedation because of issues with PWS and Oscar’s ability to metabolize medications. The novocaine would be enough, they assured me, if we could keep him calm. At his pleading I described everything. “Now they’re using a numbing agent, just like when you’re having a cavity filled. Now they’re inserting a tiny green wire and then they’ll slide the new chest tube in over that.” On and on, Oscar’s eyes locked on mine much of the time. Occasionally, I’d switch to A’s talk but he’d respond, “You’re trying to distract me, I know it. Tell me what’s happening.” So I’d switch back, Paul chiming in too. It took three tries, but finally the smaller tube was inserted and working properly.

Since the new chest tube Oscar is feeling better. He’s stopped sweating, he’s not lightheaded, and his breathing is better. Which makes sense to me because his chest cavity isn’t filling with air now every time we take him off suction to walk. And, after a full-body sloshing bed bath and a set of real pajamas from home, his spirits are better too.

We’re in a slight holding pattern now, taking intermittent chest x-rays to make sure the pneumothorax* isn’t increasing. His chest tube has been clamped all morning, simulating the conditions of removal, and if the next x-ray is stable we’ll be cleared, we hope, to leave this afternoon. No one is happier than Paul who has taken every night shift at the hospital.

*medical term for air in the chest cavity. Paul and I are competing to see who can use it correctly more times, bonus points for doing so in presence of a doctor or nurse.

(We’ve also had lots of visitors which has been so great. Grandmary is recovering from a cough and is visiting by phone. Audrey and Grandpa have come most every day. Paul’s cousin Elizabeth came Tuesday with Bridget, Orla, and Henry. Paul’s Aunt Sarah and Uncle Mike came yesterday with of their granddaughters, Lilah and Fiona, whose parents, Erin and Mike, showed up later!)

I’ll be expecting to hear pneumothorax during our next visit. I’ll have no idea if it will be in context but it will remind me that your family is a group of bad-ass fighters! Looking forward to hearing it.

Below is a possibly self-serving reflection, but I include it as you might find it helpful and/or interesting, although if not, please disregard ;-).

I’m often amazed at the complexity of medical terminology, and multiple times with patients and their families have commented on needing to translate terms for patient understanding and participation in their care (which is a new goal, also termed “patient centered care”). Translation from “medical-ese” to terms in whatever language patient speaks (language should be in quotes, as it includes completely different languages, but also implies much of culture).

It seems obvious to me that many patients and families who understand many of the processes will have better outcomes (duh), although sometimes I also think of medical situations as “jobs”, i.e. job of patient (most difficult), family/caregiver (often as difficult as patient, with different issues), providers, etc. And…often patients don’t want to understand many of processes going on (some truly unpleasant), which can also be helpful to outcomes.

Sounds like Oscar truly did want to know everything that providers were doing when changing chest tube, to help relieve anxiety!